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Everything posted by katcanny

  1. Thank you for the responses, I get bad brain fog and afternoon fatigue where I will fall asleep but I won’t even realise I have until I have woken up an hour or so later. My specialist wants me to try this and hope that I can come off fludrocortisone as I’ve been on it for three years now and my weight gain is becoming an issue. 40 kgs I have put on and everything hurts I’m not use to being so heavy. I’m worried about how I’ll feel coming down once it wears off. Do either of you find any effects when it wears off?
  2. My PoTs was debilitating when I first got diagnosed I wish I had known before I had my son, if I knew I would have thought twice about having a child. Everyday I am guilty of not being able to do something for him that a normal parent can and it rips me apart. My son is great and is understanding but because of all of this he has health anxiety and doesn’t want to go to a doctor because he is worried he will end up in hospital just like I have so many times. It’s definitely something to seriously consider
  3. Hi guys anyone got any experience with using dexamphetamine while having PoTs?
  4. Hi all 😊 my specialist has just decided that he wants to try me on dexamphetamine I have no idea why and quite frankly I am very nervous about it, I don’t want to end up in a tachycardia episode and end up in hospital and scare my son. He also thinks that I may have vestibular migraine but didn’t explain it much and said that testing was really hard so if the dexamphetamine doesn’t do anything I’ll try a drug to treat the migraine and if it works then it’s a diagnosis? Has anyone else tried dexamphetamine who has PoTs? And any info on the vestibular migraine from other people who have experienced it would be great rather than relying on doctor google kat xx
  5. They are great achievements Pistol congratulations! It’s so great that you were able to go to your daughters dance recital, as a mum I know how hard it is to miss out on a lot of events. You should be proud of your exercise achievements too! That is fantastic! That is my next goal
  6. Thank you everyone for the support but no one has mentioned their own achievements! This community is great and we need to celebrate the small things together
  7. This was one of my scary symptoms and I ended up being rushed to hospital shaking violently from head to toe with adrenaline running through after a shower, two things changed my shower problems. I only had showers at night once everyone is in bed and I can take my time and then go straight to bed myself and I continue to do this after three years after being diagnosed and I went on propranolol to block my adrenaline and that helped a lot also. I wish you all the best and remember that even a wash with some soapy water and a face washer is sometimes all we can handle on our bad days. You are not alone
  8. I thought I would share with all of the other members out there that would find my news somewhat of an achievement. I stood up and showered without a shower chair for the first time in nearly three years! It was scary and nerve racking but after many manual heart rate checks and my inner voice reminding me that my shower chair was right in front of me incase I needed it, I soldiered on and made it threw. Am I exhausted... yes but some little, tiny bit of my old self has been restored. Please share what you have done that has been an achievement anything at all!!
  9. Myself and my partner love Ip Man the whole trilogy is amazing and ronin 47 was great for a western movie too! We have watched all the Bruce Lee films and crouching tiger hidden dragon and can I say I’m partial to Kung fu Panda
  10. I get chills/pins and needles sensation all the time for no reason at all, in different parts of my body. This has happened for the past nearly three years since I was diagnosed. I get them in my arms, in my back, in my buttocks, in the back of my head it’s an odd feeling but I can get it laying down too so I don’t think it has anything to do with orthostatic intolerance? It remains a mystery to myself I have never bothered to ask a doctor because half the time I have that many symptoms the doctor gets overwhelmed so I just go with the worst symptoms
  11. Hi, sorry you are having such a rough time. I have been on Florinef since I was diagnosed 2 years and 2 months ago and without it, I wouldn’t be able to function. I went from having to use a walker to a walking stick to now being able to stand on my own for a little while anyway. It does take time to do its job and I did have side effects but it was mostly weight gain from retaining fluid. You have to drink a lot of water though and I drink about 3 litres per day and the best tip I can offer is to drink a full bottle of water before you get out of bed in the morning, I have done this every morning for two years and it didn’t help at first but after a little while it made a huge difference.
  12. I use to love a shower in the morning I just cannot do it anymore, I shower at about 8:30pm so my food has somewhat digested from dinner, I have mentally and physically rested a little before and I have a shower chair that I use everytime. Sometimes I just sit there and can’t wash my hair but it feels nice to just have water run over you sometimes. I have learnt to have showers luke warm and at the moment it’s summer time in Australia so I’m ok with that right now
  13. Thank you for the helpful tips I will definitely look into weight watchers online! I just got home from ER after being admitted overnight with worst than normal chest pain and pain down my arm and in my neck. One doc said I am carrying a lot of fluid I overheard a nurse saying my love is sluggish maybe that is the cause for this extra pain? What have people done for too much fluid retention?
  14. I’m on 3x 10mg tablets daily. I take fludrocortisone aswell but I was on that for a year before starting propranolol and no weight gain at all. My specialist wants me to cut back on my meds but I’m worried that I will go back to not being able to function. My chest pain has been bad the past week I’m thinking it might be from the extra weight I’m carrying a though. It’s very frustrating I would like for a day or two to not worry I’m having a heart attack. How have you been doing?
  15. Hey m@t, still piling on the weight haha! I thought it best to wait until after the holiday period to watch my calories so starting this coming week I’m going to be all over it! I hate the way my body feels and looks and I’m starting to have a flare up so that’s not helping either. Have you found anything helpful with weight loss? I hate that propranolol did this to me but it makes me able to function as a somewhat human being
  16. I’m definitely not going to do anything to my meds over the holiday period. Last Christmas I couldn’t even enjoy it with my family I was so unwell and don’t remember much of it to be honest. I might need to look for another specialist in POTS I really feel like an experiment at times with this one. I need florinef I did experience a very weird sensation the first week taking it I was zoned out and had to go to the toilet all the time but it settled and the only side effect I have had is weight gain but that was when I started a beta blocker aswell. I was on florinef for nearly a year before any other meds and I didn’t have any weight gain with taking it on its own.
  17. He said that I seem to be functioning at 7/10 that was his only reason. He wants me to start cutting back on both medications, I’m on florinef 2 tablets per day(the last time I tried to cut down from 1 tablet to half a tablet, I ended up in hospital for a week only to be discharged prescribed more! 2 tablets per day which helped a lot!) and propranolol which I’m on 3 times a day which is stopping my adrenaline surges. I am finally functioning enough to work most days I’m on less hours and have a lot of sick days but I’m still getting there on a regular basis. I really don’t want to do this and he didn’t even give me a plan to do this just said try to cut down every second day and see how you go, then a little more, then a little more! Isnt that dangerous especially with a beta blocker?
  18. Hi all, I had my 6 weekly specialist appointment and since I’m functioning at a 7 out of 10 according to my specialist (Still can’t drive or do anything without having a helper with me! But I’m a 7 out of 10 apparently!) he wants me to cut down on my medication when this is the best I have been functioning in over a year. Any thoughts on this or people that have done this? I feel like his guinea pig and that he just wants to see what happens. I think I may have found the right med balance o don’t want to go backwards again and lose all the progress I’ve gained. Thoughts?
  19. If you don’t mind me asking how long and how much propranolol are you taking? I have to take it three times a day 10mg tablets. I started on one tablet a day and had to move my way up to three times a day for it to fully be effective for me. Aswell as fludrocortisone that I take for blood pressure. I also had to cut out all caffeine as that could start off my adrenaline too.
  20. I use to have bad adrenaline episodes, I would be laying down or even asleep wake up be hot sweaty feel like vomiting then the shaking and trembling would start all through my body uncontrollably my partner rushed me to the er first time this happened we didn’t know what was happening to me I started taking propranolol which is a beta blocker I didn’t want to I had heard they are very hard to wean off of but it has helped with a lot of my symptoms and I have no more adrenaline surges when they start my body sort of resets itself it’s a strange feeling but you get use to it and then the adrenaline just goes away. It is also used as a preventative for migraine and after care for people who have had a heart attack too so really win win
  21. In Australia tomorrow is the first day of summer and we are in the middle of a heat wave! Last weekend we planted all of our vegetables and herbs for this planting season, tomatoes, zucchini, silverbeet, basil, oregano, chives and spring onion we are looking forward to some fresh silverbeet the store bought is nothing compared to home grown! I find the idea of a cold Xmas very romantic though we sweat through eating a big meal and then have to sit in the air conditioning until it cools down before we venture out and then it’s a small window of opportunity before the mosquitos are out and biting!
  22. Thanks for the advice Yogini i find that when i am on my own i am a little more confident but if I’m with my son I am really concerned because I don’t want to get symptomatic and scare him. I manage to get to work everyday lately but we have a nurse on staff so I’m safe there which is nice to know.
  23. Thank for replying M@t, i will try to cut out any junk foods and calorie count over the next week and give an update. I just want to be healthy and I don’t see how being overweight is good for my heart health just because it helps my blood pressure stabilise. It’s like a double edged sword!
  24. I completely agree with you Vepa I couldn’t care less about being thin I’m just concerned about the weight gain and that diabetes runs in my family being overweight can cause diabetes. I will try the calorie counting I’m just wondering what food plans people have found helped like gluten free or sugar free. I don’t want to diet as I’m feeling the best I ever have in a year I’m worried I’ll go backwards. Thank you for replying 😊
  25. This is such a good idea to give others hope and insight! my day starts at 6:30am drink a bottle of water before even attempting to get out of bed it helps a lot and I do this every single day! Get up and get my kids up for school and be ready by 8:30am to get out the door. I have to shower at night I can not do it during the day or morning it causes too much adrenaline in my body. I get to work after a very yucky drive which is only 10 minutes away but driving is still very difficult for me to do atm. I work at a primary school helping students so I am on and off my feet until 2pm when I get to take that wonderful drive home! I’m lucky that my other half picks up the kids from school so I can come home put my feet up and nap upright for about 30 minutes before they get home. I help with homework my partner makes dinner then I clean the kitchen and prepare lunches for the next day and then fall into bed after having a shower at about 10:30pm. I make sure I drink 2 litres minimum of water and I have the odd cup of tea. I can not handle coffee or anything with two much sugar like soft drink or even cordial as the sugar sets of my palpitations. I struggle to get through every day and at the moment I am just living to work and earn a living for my family. I am physically and mentally exhausted when I get home and the weekends are spent recouperating and not being able to do anything except try and prepare for the week ahead! A side note I was diagnosed a year ago and I want able to walk without a walker and couldn’t be on my feet for more than a couple of minutes so I am very thankful I have recovered this much I’ll take whatever I can get!!!
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